Creating a patient and community advisory committee at the Canadian Agency for Drugs and Technologies in Health

Abstract

In recognition of patients’ roles using, and contributing to, a publicly funded health system, the Canadian Agency for Drugs and Technologies in Health (CADTH) created a Patient and Community Advisory Committee. Twelve members bring lived experiences of chronic illness, progressive illness, mental illness, trauma, traveling long distances for treatment, and caregiving to an ill child, parent, or spouse. Members contribute their own insights and ideas but do not represent specific organizations or viewpoints. This paper explores how CADTH determined the committee's role, whether to have individuals or organizations as members, and how to recruit for diversity. The creation of this committee is changing how CADTH engages with patients.

How to mobilise users' experiential knowledge in the evaluation of advanced technologies and practices in Quebec? The example of the permanent users' and relatives' panel

“…Like INESSS, the CADTH has set up an intersectional user committee since 2019, enabling patient and caregiver experiences to be integrated into the agency's files 32 …”

“…Like INESSS, the CADTH has set up an intersectional user committee since 2019, enabling patient and caregiver experiences to be integrated into the agency's files. 32 The National Institute for Health and Clinical Excellence, United Kingdom 33 includes 'lay members' who contribute to the committee's work by passing on the thoughts of patients, people who use services, caregivers or communities. In these committees, although the majority of professional members recognised the contribution of patient involvement in helping to understand the condition, the involvement of lay members increased conflicts in decision-making and the credibility of patients' testimonies were repeatedly questioned.…”

Patient and citizen participation at the organizational level in health technology assessment: an exploratory study in five jurisdictions

“…These might be patients regarded as legitimate due to their training as expert patients (Quebec) or citizens with strong networks and experience in patient communities (Wales), or an interest in improving patient experiences and reducing inequalities (Scotland). CADTH’s interest in inequities resulted in the creation of a patient and community group comprising individuals with a diversity of lived experiences rather than representatives of organizations or viewpoints (7). The different contexts and goals influence these variations between jurisdictions (6).…”

“…In 2017, Facey’s mosaic further described areas for participation at the organizational level: developing and evaluating patient involvement processes and methodologies; influencing wider assessments methods, organizational processes, and values; and capacity building (4). Two recent examples in the literature of organizational level participation are the Canadian Agency for Drugs and Technologies in Health (CADTH) Patient and Community Advisory Committee (7) and the National Institute for Health and Care Excellence (NICE) “NICE Listens” deliberative public engagement programme which both seek public guidance, especially to address health inequalities (8).…”